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Celiac.com 01/25/2009 - It’s a brand new year with a brand new vibe. I’m excited to be launching a new year of education and advocacy on behalf of the gluten-free community, beginning with an upcoming speaking engagement. On February 10th, I’ll have the opportunity to speak with and hold a gluten-free cooking demonstration for chefs-in-training at the Western Culinary Institute, in Portland, Oregon. They may be a challenging audience, as I attempt to encourage them to think “outside the box” of more is better when it comes to exotic ingredients. The trend of the past decade seemed to be “vertical food”, with a sauce, a base, a main ingredient, another sauce, topped by two or three garnishes. While dishes resembling food-as-art may tickle the taste-buds, they are a minefield for those with food allergies and sensitivities. The incidence of food allergies, which were once rare, has increased 18% in recent years and the numbers of people affected continue to grow. [The top eight food allergens are: dairy (cow’s milk), eggs, peanuts, tree nuts (almonds, pecans, walnuts, hazelnuts etc.), wheat, soy, fish, and shellfish – and corn is another top allergen] Food allergies seldom come individually - chances are that the person allergic to peanuts is also allergic to eggs or dairy, or both. So, what’s can a foodie with food allergies to do? Forgo attending family events, parties, and other social engagements, or worse, bring their own food in an attractive Tupper-ware container? Sadly, these are options that many of the food-allergic have to consider. Handling a life with food allergies is a challenge for adults, and must be especially difficult for parents of kids with multiple food allergies, who bear the responsibility of safe-guarding their children's health. It may surprise you to know that four million American children have food allergies - that’s a sizable portion of future consumers for any business to consider. Food sensitivities are also a big issue with many adults. Lactose intolerance and gluten intolerance are problems for many people, and finding safe, healthy and interesting food choices is not easy. Here’s a story that illustrates how we’ve had to adapt. Recently we spent a ski weekend in Bend, Oregon. I baked my own gluten-free bread, and brought along other treats to keep in our hotel room. I asked the maitre de at our hotel to check with the chef about the preparation of foods in the breakfast buffet, so I would know what, if anything, I could eat. Mostly I made do with tea, fresh fruit, and my home-made gluten-free challah bread. Lunch was a no-brainer – there wouldn’t be much that I could safely eat at the ski resort, so I brought along some gluten-free Larabars – (ingredients: dates, almonds, dried apples, cinnamon) and we planned an early dinner. Later that evening, in a popular Bend landmark, I was happy to see a few choices I thought I could eat, with a few modifications. When my entree of seared Ahi tuna arrived, my son commented, “Mom, you must be an expert on that dish by now – I’ve seen you order it in a dozen restaurants!” He was right. Plain seared Ahi tuna, coated only in sesame seeds, served on greens, with a rosette of pickled ginger and wasabi, is my restaurant stand-by. I love Japanese food, but this popular dish is often served at seafood restaurants and sidewalk cafes too. With a side of green salad, or maybe the vegetable of the day, I’m set. I do wish there were more offerings to choose from, and it’s a shame that there aren’t. Very fresh seasonal ingredients, simply prepared, are truly wonderful and full of flavor that doesn’t need to be covered up by crusts, sauces, or heavy spices. A glance at the top eight is evidence that allergies to fruits, vegetables, or fresh herbs are less common than allergies to high protein foods. So, why not use them in abundance? Here’s another story that illustrates my point. While in Costa Rica a few years ago, my family had many wonderful meals. The food was always very fresh, and naturally gluten and dairy free. I never needed to check with the staff – I only needed to read the menu like anyone else. But we all agree that the very best meal we had was the night we drove down a rutted dirt road to a shack on the beach, where the sun was just beginning to set. The place looked deserted, with no lights and no customers. I asked my husband, “are you sure this is the place?” He said he’d followed the directions he’d been given. My mind began to spin some of the scary scenarios I’d seen in movies. As soon as our car pulled to a stop, we were surrounded by the ubiquitous barking dogs found in every village in Central America. A screen door slammed shut, and a slightly built man came up to the car. My husband rolled the window down and said in Spanish that we’d heard that this was a great place to eat. The gentleman led us into a gazebo, lit some candles, and seated us at a rickety table. He did not hand us any menus. Our host told us that he had caught two kinds of fish that day – swordfish and tuna. He said we could have them prepared with either ginger or garlic. He did not describe the method of preparation or what else came with the meal. Since we were rapidly being devoured by mosquitoes, we chose our options quickly. A few minutes later we were handed a can of “Deep-Woods OFF” Mosquito repellant, with a smile, and our host/fisherman, and presumably chef, left to prepare our dinner. In about twenty minutes, he arrived bearing four large platters of steaming hot grilled fish, well-coated with our seasonings of choice and garnished by fresh grilled vegetables and greens, warm home-made corn tortillas, salsa, and rice. Nothing else. It was the freshest, most deliciously prepared meal I had ever eaten. And I think it cost about twelve dollars for the four of us. So, I’m going to talk with these aspiring chefs about the importance of including simply prepared but still delicious foods on their menus. I may never tire of seared tuna, but it may not be someone else’s cup of tea. Reasonable choices should be part of any menu, and can be, with a conscious effort. At my husband’s Christmas party, I was pleasantly surprised by a buffet I could actually eat. The menu consisted of three types of small kabobs: plain grilled vegetables, grilled shrimp still in the shell, and grilled chicken, a huge tray of freshly prepared sushi, with ginger and sauces on the side, and another huge tray of Vietnamese salad rolls in rice paper wrappers. I asked first about marinades, avoided any dipping sauces, and was just fine. It was fun to be able to partake of the beautiful buffet, and I went out of my way to personally thank the catering crew. Some of the worst food from a nutritional stand-point, and certainly the worst from the perspective of someone with food allergies, has been served in the cafeterias of hospitals where I’ve worked or visited patients.. In these institutions dedicated to promoting health, nearly every entrée is breaded, sauced, cheese-coated, or poached in a pool of milk. Thanks goodness for the salad bar. Even the soups are suspect, as they are usually mass-produced, or made from a dry mix containing ingredients that the food-allergic cannot tolerate. Surely our institutions and hospitals can do better. Whether these future chefs work in a food service, or an up-and-coming tapas bar, I’m hoping to inspire them to use their creativity in a different way, to offer the freshest, healthiest food possible, and minimize the number of sauces and extraneous ingredients in at least a portion of the dishes they develop. I’ll also talk about the growing epidemic of gluten-intolerance in this country and the possible impacts it will have on the food industry. In fact, I think I’ve found the topic for my next article! -
Celiac.com 10/30/2006 - Triticum monococcum wheat is also known as Einkorn wheat and small spelt, but do not confuse it with common spelt which is not the same thing. Einkorn is the oldest and most primitive cultivated wheat, and recent studies have shown that it appears to lack gliadin toxicity and may be a safe wheat alternative for those with celiac disease. In the most recent study the researchers conclude that data show a lack of toxicity of triticum monococcum gliadin in an in vitro organ culture system, suggesting new dietary opportunities for celiac patients. If this is the case it appears that this grain is non-toxic to those with celiac disease. Scand J Gastroenterol. 2006 Nov;41(11):1305-11. Lack of intestinal mucosal toxicity of Triticum monococcum in celiac disease patients. Pizzuti D, Buda A, DOdorico A, DInca R, Chiarelli S, Curioni A, Martines D. Abstract: Objective. The treatment of celiac disease is based on lifelong withdrawal of foods containing gluten. Unfortunately, compliance with a gluten-free diet has proved poor in many patients (mainly due to its low palatability), emphasizing the need for cereal varieties that are not toxic for celiac patients. In evolutionary terms, Triticum monococcum is the oldest and most primitive cultivated wheat. The aim of this study was to evaluate the toxicity of T. monococcum on small intestinal mucosa, using an in vitro organ culture system. Material and methods. Distal duodenum biopsies of 12 treated celiac patients and 17 control subjects were cultured for 24?h with T. aestivum (bread) gliadin (1?mg/ml) or with T. monococcum gliadin (1?mg/ml). Biopsies cultured with medium alone served as controls. Each biopsy was used for conventional histological examination and for immunohistochemical detection of CD3?+?intraepithelial lymphocytes (IELs) and HLA-DR. Secreted cytokine protein interferon-? (IFN–?) was measured in the culture supernatant using an enzyme-linked immunoadsorbent assay. Results. Significant morphological changes, HLA-DR overexpression in the crypt epithelium and an increased number of CD3?+?IELs, found after bread gliadin exposure, were not observed in celiac biopsies cultured with T. monococcum gliadin. In contrast, with bread gliadin, there was no significant IFN-? response after culture with monococcum gliadin. Similarly, biopsies from normal controls did not respond to bread or monococcum gliadin stimulation. Conclusions. These data show a lack of toxicity of T. monococcum gliadin in an in vitro organ culture system, suggesting new dietary opportunities for celiac patients. Note: Celiac.com strongly advises against celiacs including these grains in their diet until more testing and research is done to verify their safety. Einkorn Breadmaking Sites: Cereal Chem. 73 (2):208-214 Breadmaking Quality of Einkorn Wheat (Triticum monococcum ssp. monococcum). http://www.aaccnet.org/cerealchemistry/backissues/1996/73_208.pdf Cereal Chem. 76 (5): Pub. no. C-1999-0804-01R Einkorn Characterization for Bread and Cookie Production in Relation to Protein Subunit Composition. http://www.aaccnet.org/cerealchemistry/abstracts/1999/0804-01r.asp -
Celiac.com 07/30/2007 - Mmmmm...Toast. The smell of toast filling the room in the morning. A perfectly toasted piece of white bread transformed to a perfectly golden brown at the center and at the edges, an aroma packed with memories, evoking deep sighs and wistful smiles. Toast is the perfect comfort food. It's also something I've practically given up on bread since I became gluten-free. So, when my Garbo gluten free, dairy free Toast bread arrived, I tried not to get too excited. I'd never tried it and was taking a stab at joy. Most of the breads I've tried required toasting first to be anywhere near palatable, and even then, the ones I've tried have been too dense, too chewy, way too sticky, and distinctly lacking in flavor. Most of all, I've yet to find one that gives off the memory-rich aroma of freshly toasted white bread. Until now. Garbo Toast Bread has officially rocked my world! Gluten-Free and dairy-free, Garbo Toast bread brings the joy of toast back to the world of the gluten-free diet. First, I tried it straight from the toaster and slathered with butter. It was perfectly chewy, and not at all sticky like so many gluten-free breads I've tried and given up on. If I hadn't known it was gluten-free, I would have had to double check. It looked and smelled and tasted like some kind of exotic European white bread. Later on, I experimented. Since I still eat dairy, I toasted a slice and tried it with a soft-boiled egg! I was in heaven.For lunch I toasted two slices,buttered them, then added a slice of cheese. I then grilled it gently over a medium heat for the most wonderful toasty, gluten free grilled cheese sandwich. The next morning I had a slice with butter and my favorite jam.More heaven. I went through my first bag of Garbo Toast bread in two days!I promptly ordered not one, not two, but four more loaves! With their gluten free, dairy free Toast bread, Garbo has brought the joy of toast...warm, aromatic, perfectly golden, perfectly chewy, perfectly yummy toast back to my previously untoasty gluten-free life. For those us whose lives are dark without toast, and only a bit brighter with our previous toast choices, we salute Garbo! For those about to toast, Garbo salutes you! -
Celiac.com 06/13/2012 - In general, doctors and researchers know a good deal about how celiac disease works, and they are finding out more all the time. However, they know very little about non-celiac gluten sensitivity (NCGS). In an effort to learn more about non-celiac gluten sensitivity, a team of researchers recently carried out a study to measure the presence of somatization, personality traits, anxiety, depression, and health-related quality of life in NCGS individuals, and to compare the results with celiac disease patients and healthy control subjects. They also compared the response to gluten challenge between patients with non-celiac gluten sensitivity and those with celiac disease. The research team included M. Brottveit, P.O. Vandvik, S. Wojniusz, A. Løvik, K.E. Lundin, and B. Boye, of the Department of Gastroenterology at Oslo University Hospital, Ullevål in Oslo, Norway. In all, the team looked at 22 patients with celiac disease and 31 HLA-DQ2+ NCGS patients without celiac disease. All patients were following a gluten-free diet. Over a three day period, the team challenged 17 of the celiac disease patients with orally ingested gluten. They then recorded the symptoms reported by those patients. They did the same with a group of 40 healthy control subjects. The team then had both patients and healthy control subjects complete questionnaires regarding anxiety, depression, neuroticism and lie, hostility and aggression, alexithymia and health locus of control, physical complaints, and health-related quality of life. Interestingly, patients with non-celiac gluten sensitivity reported more abdominal (p = 0.01) and non-abdominal (p < 0.01) symptoms after the gluten challenge than patients with celiac disease. The increase in symptoms in non-celiac gluten sensitivity patients was not related to personality. However, the two groups both reported similar responses regarding personality traits, level of somatization, quality of life, anxiety, and depressive symptoms. Responses for both groups were about the same as for healthy controls. The results showed that patients with non-celiac gluten sensitivity did not show any tendencies toward general somatization, as both celiac disease patients and those with non-celiac gluten sensitivity showed low somatization levels. Source: Scand J Gastroenterol. 2012 Apr 23. -
Celiac.com 3/14/2003 - After conducting an extensive review of the medical literature concerning the safety of oats for people with celiac disease, the American Dietetic Association recently concluded that even though oats are not yet endorsed as safe for people with celiac disease by doctors and support groups in the USA, they should, however, be safe for celiacs who choose to consume them if they limit their consumption to amounts found to be safe in several studies (approximately one-half cup of dry whole-grain rolled oats per day). Ideally, they also should be advised to consume only those products tested and found to be free of contamination. If this is not possible, patients should be counseled on steps they can take to help reduce their chances of consuming contaminated oat products (e.g., avoiding oats sold in bulk from bins, determining from manufacturers whether a dedicated line or facility is used for processing). In addition, patients should be advised to discuss any dietary changes with their physicians. The American Dietetic Associations conditional acceptance of oats as safe for people with celiac disease is another big step forward for celiacs in the USA. For more information see: Oats and the gluten-free diet Journal of the American Dietetic Association March 2003 - Volume 103 - Number 3
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Celiac.com 11/26/2012 - I speak to many people from across the country, and internationally, who contact me requesting help. The issues they face are summarized into three categories: individuals with celiac disease who do not have their disease under good control; those with gluten sensitivity who remain less than healthy despite their gluten-free diet; individuals, and this is a big one, who are convinced that they have a gluten problem, due to self experimentation, but who are unable to get any corroboration or support from their doctors. Having been immersed in this field for almost twenty years, it is frustrating not having a laboratory test that will reliably state whether someone has celiac disease or if gluten sensitivity has been ever present. The good news is that this situation has improved. It’s not perfect, but it’s better than it has been, and I wanted to share this data with you and those you care about. These newly available tests can have a big impact on those who need a diagnosis, as well as those who are already gluten-free but want to know why they are not enjoying the good health they desire. I have no affiliation with either of the labs I mention so there is no conflict of interest in my recommendations. The first lab, Cyrex Laboratories, is the newest lab specializing in gluten intolerance in the US. It currently offers four different profiles. There is a fifth one coming, hopefully very soon, that is also very exciting and a description of it follows. I will provide the data that the lab lists in their brochure for each test along with my personal opinion as to its benefit and use. Here at HealthNOW Medical Center we have been utilizing these tests for almost five months—the lab just opened in January after three years of research and passing governmental licensing requirements. Array 1: Gluten Sensitivity “This is a saliva test which is recommended for patients who: Are suspected of having mucosal abnormality Have relatives with celiac disease Have type 1 diabetes Have autoimmune thyroid disorder Have relatives with autoimmune disorders, especially, multiple sclerosis, diabetes and arthritis.” This is an easy screening test for those who wonder if they have gluten sensitivity or celiac disease based on their own symptoms or symptoms in their family. As a saliva test it’s very easy to perform (no blood draw is needed) and it’s the least expensive of all the tests offered. When utilizing saliva, a test is only as accurate as the strength of the salivary immune system. Due to this limitation, the lab also measures this as part of the panel. In the past, labs would not include this measurement, sometimes resulting in false negative results—something we all wish to avoid. Array 2: Intestinal Barrier Integrity Screen “Intestinal barrier integrity plays a vital role in the overall health and well-being of patients. This blood test is recommended for patients who: Have gut dysbiosis, which appears to be resistant to standard therapy Are suspected of having intestinal mucosal damage Complain of food allergy and intolerance Present multiple symptom complaints (including chronic fatigue syndrome) Suffer from abnormal immune cell count and function (including autoimmune diseases) May suffer from depression or neuroautoimmunity [including such conditions as: thyroid disease, arthritis, myocarditis, dermatitis, endocrinopathy, osteoarthritis and pernicious anemia] ” Healing a leaky gut is a very big part of regaining one’s health after a diagnosis of gluten intolerance. Gluten has caused damage to the lining of the small intestine and the presence of this damage is thought to be an initiator of the many “non-digestive” symptoms and diseases that are associated with gluten, including autoimmune disease. Prior to this test two substances have been traditionally used to measure a leaky gut: lactulose and mannitol. The disappointment of the test lay within the sensitivity, or I should say lack of sensitivity, to adequately diagnose subtle leakiness vs. gross leakiness such as that found in advanced celiac disease and complete villous atrophy. Much as an intestinal biopsy can miss the early and more subtle damage to the villi of the small intestine [its lining], so too does the lactulose/mannitol test seem to miss the more subtle changes in a leaky gut. This test will detect increased permeability through the cells that line the small intestine, as well as increased permeability between the cells. Clinically we use this test as a gauge of how we are progressing clinically rather than as a first tier diagnostic tool. There is no sense in measuring a leaky gut when it’s obviously there. But to prove that a clinical program is producing results or to perhaps show a less than compliant patient that their indiscretions are creating problem, this is an excellent test. Array 3: Comprehensive Gluten Sensitivity & Autoimmunity “To broaden the view of celiac disease and gluten sensitivity, our doctors can better diagnose the disorder by assessing antibody production against an array of protein, enzyme and peptide antigens. This blood test is recommended for patients who: Have gut dysbiosis—poor probiotic balance Are suspected of having intestinal mucosal damage—this means damage to the lining of the small intestine Complain of food allergies Complain of chemical hypersensitivity Present multiple symptom complaints (including chronic fatigue syndrome and Fibromyalgia) Suffer from abnormal immune cell count and function May suffer from depression or neuroautoimmunity [see below] Neuroautoimmune patients to consider: thyroid, arthritis, myocarditis, dermatitis, endocrinopathy, polyendocrinopathy, osteoarthritis and pernicious anemia” This panel is the broadly inclusive blood test designed to measure both celiac disease and gluten sensitivity. Because this test measures several aspects of the protein structure (rather than just the single protein fragment heretofore analyzed), we believe it will take many of the false negatives out of the picture—certainly a welcome change. Despite feeling better when removing gluten from their diets, patients like to confirm their own experience with a third party lab test. In the past, lab tests were so riddled with false negatives that we had to encourage patients not to discount their personal experience with a gluten-free diet, despite the absence of correlation with the lab test. This approach was not always successful and at times patients returned to gluten simply because they had no lab test to verify the truth. Inevitably they would return to us many months later, feeling worse than ever and ready to, once again, look at a gluten-free diet. This panel is more sensitive and specific than any we have had in the past, thereby reducing false negatives greatly. A patient does have to be consuming gluten for this profile to be accurate. Array 4: Gluten-Associated Cross-Reactive Foods Complete normalization of gut lesions is very rare in adult patients with celiac disease (8%), despite compliance with the gluten-free diet. This may be due to cross-reactions with an array of foods. This blood test is recommended for patients who: Have gluten sensitivity or celiac disease. Are non-responsive on a gluten-free diet—in other words don’t feel better. Have gut dysbiosis [not enough healthy bacteria and too many unhealthy ones], which appears to be resistant to standard therapy. Have an autoimmune disorder. This panel is very exciting and we are already seeing a dramatic impact on our patients. When one has eliminated gluten (and often dairy) from one’s diet, it obviously takes a big commitment. The last thing such a person might want to hear is that there are other foods they may also need to eliminate. Consider this: What if a temporary dietary change of eliminating foods that are confirmed as problematic on a laboratory test resulted in the difference between continued ill health and good health? Now, perhaps, it sounds like a good idea. That is exactly what we found in patients who were being extremely vigilant about their diet but still felt “glutenated” or just ill and the cause was not being found. Cross-reactive foods are foods with a protein structure similar to gluten’s that, upon ingestion, confuse one’s immune system into thinking that it has ingested gluten. The proteins are confused, one for another, and the reaction is as negative as if one has consumed gluten. This panel looks at twenty five possible foods (mostly in the grain and dairy families) to which one could be experiencing a cross-reactivity reaction. While it definitely takes a further commitment to confront more dietary change, our current patients consider it well worth it based on their health improvement. Finally, Array 5 that is not yet released, will focus on possible autoimmune reactions occurring from gluten. Autoimmune diseases can be “in the works” so to speak for well over a decade before the body experiences its first symptom. As the third leading cause of death in this country and with no known cure, any forewarning of autoimmune activity would be an excellent tool. This test provides another much needed tool for those patients who, although know they are gluten intolerant, cheat on their diet with seeming impunity—meaning they don’t feel any ill effects from having done so. Array 5 will be able to reveal what is occurring on a deeper level of the body such that the patient can see where gluten may be beginning to create autoimmune tendencies in certain organs or systems that he or she cannot feel. The second laboratory I want to mention is Enterolab. Although Enterolab is not new, they are unique. A few things make them different from all other labs I know about: You don’t have to work with a doctor to receive a lab test. Enterolab works directly with the patient on-line. They will send you a test kit after you have paid them and test results are emailed to the customer. Enterolab uses stool testing for their celiac and gluten sensitivity panels. They have a unique technology that allows them to test for these conditions even if the patient has not been eating gluten. They offer genetic testing as well as testing for other food intolerances. Once again, no doctor referral is required. I believe these tests offer benefit not only for those who need a diagnosis but also for those with a diagnosis who are not yet enjoying ideal health. I hope you found this informative. Please do feel free to contact me regarding any further questions that you may have. Our clinic, HealthNOW is a destination clinic and we treat patients from across the country as well as internationally. We are here to help. To your good health! -
The following is a post by Donald D. Kasarda (kasarda@pw.usda.gov) that was written to Michael Coupland of Kellogg (Cereal Company). Dear Michael, I have been asked to comment on your reply to Bev Lewis about the absence of gluten (or the barley equivalent) in malt flavoring. I am a cereal chemist who is sometimes asked for advice in regard to the gluten proteins as they relate to celiac disease by celiac patient organizations. I have provided advice to Kellogg in the past in regard to safe processing of a rice cereal (Kenmei) in order to avoid contamination. Kenmei has since been discontinued by the company. While it is possible that the malt flavoring you refer to is free of all harmful peptides, your statement that because the flavoring is a water wash of malt, it is free of gluten, is not in itself completely satisfying for the following reasons. At present, we are pretty sure that peptides derived from gliadin proteins that consist of as few as 12 amino acids can be toxic. These small peptides are sometimes quite water soluble as well. When malt is prepared by germination of barley, hydrolytic enzymes break down the harmful (to celiac patients) hordein proteins. It is possible that some of the resulting peptides are small enough to be water soluble, but large enough to retain harmful activity in celiac disease. A peptide of molecular weight no greater than about 1300 could potentially still be active in celiac disease. Therefore, the water wash could pick up harmful hordein peptides. Furthermore, unless the wash was centrifuged or filtered to clarify it, it could pick up small amounts of suspended particles that could contain hordein proteins or fragments of them that resulted from the protease action during germination. The amounts of harmful peptides or proteins that end up in a malt-flavored cereal might well be insignificant for celiac patients, for, after all, the amounts in the wash are likely to be small and the amount of flavoring added to the cereal is probably a small part of the total solids. My main point is that some transfer of harmful peptides to the water wash could occur and unless your researchers have studied this question and have some basis for concluding that the amounts are insignificant (other than because a water wash was used), perhaps it would be best to indicate that some uncertainty still exists. Incidentally, my suspicion is that there is not enough of the harmful peptides in Rice Krispies to cause harm to celiac patients, but for me it is only a suspicion in that I know of no experimental measurements or calculations in regard to the question and we still do not have a really solid indication of how little of the harmful proteins or peptides is OK for celiac patients on a daily basis. Sincerely, Don Kasarda
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Celiac.com 02/06/2013 - Villous atrophy (VA) in the small intestine is one of the prime features of celiac disease, and has been associated with increased mortality, but it is unknown if mortality is influenced by mucosal recovery. To better understand the relationship between mucosal healing and mortality in celiac disease, a research team set out to determine whether persistent villous atrophy is associated with mortality in celiac disease patients. The research team included B. Lebwohl, F. Granath, A. Ekbom, S.M. Montgomery, J.A. Murray, A. Rubio-Tapia, P.H. Green, and J.F. Ludvigsson. They are variously affiliated with the Celiac Disease Center at the Department of Medicine of Columbia University College of Physicians and Surgeons in New York, NY, the Clinical Epidemiology Unit at the Department of Medicine of Karolinska University Hospital and Karolinska Institutet in Stockholm, Sweden. The team used biopsy reports from every pathology department (n = 28) in Sweden to identified 7,648 individuals with celiac disease, which they defined as the presence of villous atrophy, and who had undergone a follow-up biopsy within 5 years of diagnosis. They used Cox regression to assess mortality according to follow-up biopsy. Celiac patients were 28.4 years of age, on average, and 63% were female. The average follow-up after diagnosis was 11.5 years. Overall, patients who underwent follow-up biopsy had lower mortality rates than those who did not undergo follow-up biopsy (Hazard Ratio 0.88, 95% CI: 0.80-0.96). Of the 7648 patients who underwent follow-up biopsy, 3317 (43%) showed persistent villous atrophy. In all, 606 (8%) patients died. However, patients with persistent villous atrophy died at about the same rates as those with mucosal healing (HR: 1.01; 95% CI: 0.86-1.19). Also, children with persistent villous atrophy showed no increase in mortality (HR: 1.09 95% CI: 0.37-3.16) or adults (HR 1.00 95% CI: 0.85-1.18), including adults older than age 50 years (HR: 0.96 95% CI: 0.80-1.14). Mortality rates for celiac patients with persistent villous atrophy are about the same as for celiac patients with healthy guts. So, persistent villous atrophy is not tied to higher mortality for celiac disease patients. That means that even though a follow-up biopsy will help doctors to spot refractory disease in symptomatic patients, persistent villous atrophy is not useful in predicting future mortality. Source: Aliment Pharmacol Ther. 2013 Feb;37(3):332-9. doi: 10.1111/apt.12164.
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Celiac.com 12/03/2012 - Gluten sensitivity has recently been added to the spectrum of gluten-related disorders, but precise diagnostic markers do not yet exist. A research team recently set out to understand the blood test pattern of gluten sensitivity, and to compare it with the blood test pattern seen in celiac disease. The researchers included U. Volta, F. Tovoli, R. Cicola, C. Parisi, A. Fabbri, M. Piscaglia, E. Fiorini, G. Caio, of the Department of Clinical Medicine at University of Bologna's St. Orsola-Malpighi Hospital in Bologna, Italy. For their study, the researchers looked at blood samples from 78 patients with gluten-sensitivity and 80 patients with celiac disease. They assessed levels of immunoglobulin (Ig)G/IgA antigliadin antibodies (AGA), IgG deamidated gliadin peptide antibodies (DGP-AGA), IgA tissue transglutaminase antibodies (tTGA), and IgA endomysial antibodies (EmA). They found positive readings for IgG AGA in 56.4% of patients with gluten-sensitivity, and in 81.2% of patients with celiac disease. Antibody levels for both groups were in the high range. They found IgA AGA in 7.7% of patients with gluten-sensitivity, and in 75% of patients with celiac disease, which shows lower enzyme-linked immunosorbent assay activities in gluten-sensitivity patients than in patients with celiac disease. Only 1 of the 78 patients with gluten-sensitivity tested positive for IgG DGP-AGA, which was found in nearly 90% of patients with celiac disease. All patients with gluten-sensitivity tested negative for IgA tTGA and IgA EmA, while 98.7% of patients with celiac disease tested positive for IgA tTGA, and 95% were positive for IgA EmA. Patients with gluten-sensitivity presented a variety of intestinal and extra-intestinal symptoms, including abdominal pain, bloating, diarrhea, constipation, foggy mind, tiredness, eczema/skin rash, headache, joint/muscle pain, numbness of legs/arms, depression, and anemia. Small intestinal mucosa for these patients was either normal or only mildly abnormal. The data from these blood tests show that more than half of patients with gluten sensitivity will test positive for IgG AGA, and a small number will test positive for IgA AGA, but none will show positive results for EmA, tTGA, and DGP-AGA, which are the specific markers of celiac disease. Source: J Clin Gastroenterol. 2012 Sep;46(8):680-5. -
Celiac.com 02/20/2012 - The U.S. Food and Drug Administration (FDA) is gathering information on drug ingredients derived from wheat, rye or barley, to help people with celiac disease make better-informed decisions when buying drugs and other health products. Specifically, the FDA is asking pharmaceutical companies for information about any ingredients derived from wheat, rye or barley, that are used to make U.S. products. Additionally, the FDA is seeking information about the prevalence of such ingredients, processing steps taken or possible to remove gluten, and any current gluten testing practices. The FDA is also seeking to understand exactly how crucial ingredients derived from wheat, rye and barley are to the production of any given drug that may contain them, and to press for possible substitutes. Lastly, the FDA wants to make certain that people with gluten sensitivities get complete information when receiving drugs in a clinical setting. Overall, the FDA seems to be making certain that the known allergens in wheat, rye and barley are getting proper attention from drug manufacturers. Stay tuned for the results, and for information on how these FDA actions impact gluten-free issues regarding drugs, health and medical products in the future. Source: http://www.in-pharmatechnologist.com/Materials-Formulation/FDA-researching-gluten-in-drugs-to-help-celiac-disease-patients -
The following is a post by Donald D. Kasarda that was written to Michael Coupland of Kellogg (Cereal Company). Dear Michael, I have been asked to comment on your reply to Bev Lewis about the absence of gluten (or the barley equivalent) in malt flavoring. I am a cereal chemist who is sometimes asked for advice in regard to the gluten proteins as they relate to celiac disease by celiac patient organizations. I have provided advice to Kellogg in the past in regard to safe processing of a rice cereal (Kenmei) in order to avoid contamination. Kenmei has since been discontinued by the company. While it is possible that the malt flavoring you refer to is free of all harmful peptides, your statement that because the flavoring is a water wash of malt, it is free of gluten, is not in itself completely satisfying for the following reasons. At present, we are pretty sure that peptides derived from gliadin proteins that consist of as few as 12 amino acids can be toxic. These small peptides are sometimes quite water soluble as well. When malt is prepared by germination of barley, hydrolytic enzymes break down the harmful (to celiac patients) hordein proteins. It is possible that some of the resulting peptides are small enough to be water soluble, but large enough to retain harmful activity in celiac disease. A peptide of molecular weight no greater than about 1300 could potentially still be active in celiac disease. Therefore, the water wash could pick up harmful hordein peptides. Furthermore, unless the wash was centrifuged or filtered to clarify it, it could pick up small amounts of suspended particles that could contain hordein proteins or fragments of them that resulted from the protease action during germination. The amounts of harmful peptides or proteins that end up in a malt-flavored cereal might well be insignificant for celiac patients, for, after all, the amounts in the wash are likely to be small and the amount of flavoring added to the cereal is probably a small part of the total solids. My main point is that some transfer of harmful peptides to the water wash could occur and unless your researchers have studied this question and have some basis for concluding that the amounts are insignificant (other than because a water wash was used), perhaps it would be best to indicate that some uncertainty still exists. Incidentally, my suspicion is that there is not enough of the harmful peptides in Rice Krispies to cause harm to celiac patients, but for me it is only a suspicion in that I know of no experimental measurements or calculations in regard to the question and we still do not have a really solid indication of how little of the harmful proteins or peptides is OK for celiac patients on a daily basis. Sincerely, Don Kasarda
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Celiac.com 05/27/2008 - People with celiac disease know all too well that the only effective treatment at present is faithfully following a gluten-free diet. There’s been a lot of talk about various therapies and enzyme treatments that would allow people with celiac disease to return to a normal diet. Talk to anyone who suffers from celiac disease and they’ll likely have a personal horror story about a time when they had an unhappy episode of cross-contamination. So, the idea of a drug that would prevent such symptoms is appealing, and the goal, desirable. The chief cause of recurring symptoms in celiac disease is accidental gluten exposure, usually through cross-contamination. Cross-contamination doesn’t always mean food. Gluten is a common ingredient in many medicines and vitamins, and exposure in celiacs can cause diarrhea, weight loss, abdominal pain, anemia and oral ulcerations in the short-term, and myriad other problems in the long-run. The drug AT-1001 is a good example of how the realities are playing out on the front-lines of science. AT-1001 is an enzyme therapy that has promised some degree of protection from gluten exposure in people with celiac disease. A team of researches recently set out to assess the effectiveness of AT-1001 in preventing gluten from crossing the gut barrier by reversing the defective barrier mechanism. This required evaluating intestinal permeability between those exposed to gluten after taking AT-1001, those exposed without AT-1001, and control groups. The of intestinal function is done by gauging the absorption rates of various sugars. Early testing of AT-1001 showed some progress and a significant rate of protection of celiac patients exposed to wheat proteins. The research team looked at 86 subjects with celiac disease. The patients were divided into three groups. The first group was given placebo AT-1011 and challenged with gluten, the second group was given either active or placebo AT-1001, while the third group was given gluten and active AT-1001. After the first week, all subjects showed improvement, possibly due to closer adherence to a gluten-free diet. At three weeks, those given AT-1001 showed substantial improvement over the group given gluten and placebo AT-1001, including reduced intestinal permeability and fewer symptoms of gluten toxicity. The problem is that while AT-1001 shows a degree of promise, the results are so far underwhelming. The research team noted that the degree of improvement did not match the primary study. The results are, however, strong enough to encourage researchers to conduct a larger trial of AT-1001, which is currently underway. It’s important to remember that celiac disease is an immune disorder and no immune disorder has ever been fully cured. So, the idea of people with celiac disease being able to take a pill and head out for a night of pizza and beer without the standard celiac-related reactions is far-fetched at best. At best, such drugs would likely help to prevent cross-contamination, rather than conveying immunity to gluten proteins. Until then, stay tuned…best of luck with the gluten-free diet! Presented by Dr. Leffler at the 2009 Digestive Disease Week on Tuesday, May 20 at 10:45 a.m. Pacific Time in room 10, San Diego Convention Center.
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Gut 2005;54:54-59. Celiac.com 01/20/2005 - A link between untreated celiac disease and a rare enteropathy-type T-cell lymphoma (ETTL) has been well established by several studies. According to Dr. Karin Ekstrom Smedby of the Karolinska Institute in Stockholm and colleagues, there is also an increase in the prevalence of other types of lymphomas in those with celiac disease, such as B cell and non-intestinal lymphomas. In their study the researchers reviewed and reclassified 56 cases of malignant lymphomas that occurred in 11,650 hospitalized celiac disease patients in Sweden. The observed numbers of lymphoma subtypes were compared with those expected in the Swedish population. The researchers discovered that a majority of the lymphomas were not intestinal T-cell lymphomas, but were B-cell non-Hodgkin lymphoma (NHL). In addition, 44% of the patients with B cell NHL had a history of other autoimmune/inflammatory diseases. As expected, the relative risks for T-cell NHL and primary gastrointestinal lymphomas were markedly increased. According to the researchers: "Most lymphomas complicating coeliac disease are indeed related to the disease and are not of the ETTL-type. There was a remarkable aggregation of autoimmune/inflammatory disorders, female sex, coeliac disease, and B cell lymphoma."
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Celiac.com 03/07/2007 - A recent study conducted in Sweden shows that individuals with celiac disease apparently face a significantly greater risk of contracting tuberculosis, possibly due to mal-absorption of vitamin D, according to a report in the January 2007 issue of Thorax. Researchers found that people with prior tuberculosis are 2.5 times more likely to get celiac disease than those with no prior tuberculosis. According to lead investigator, Dr. Jonas F. Ludvigsson, of Orebro University Hospital, this indicates that celiac disease is fairly common in individuals who have tuberculosis. It also appears that tuberculosis is in fact more common in those with celiac disease than in those without. Dr. Ludvigsson and a team of colleagues compared the risk of tuberculosis in more than 4000 patients with celiac disease to that of 69,000 matched individuals in a general population-based study. The study showed the presence of celiac disease corresponded to about a 3-to-4 times greater risk of subsequent tuberculosis. Similar results were found when the study population was grouped by their gender and age at the time of diagnosis for celiac. The researchers concluded that celiac disease could affect the action of tuberculosis medication. Further studies are likely warranted, as the study involved a fairly small number of cases, and only 24 celiac patients had contracted tuberculosis. Subsequent confirmation of these findings would likely warrant making it standard practice to do serological testing for celiac disease in tuberculosis patients with gastrointestinal symptoms or with apparent drug resistance. Thorax 2007;62:1-2,23-28. health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.
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Celiac.com 12/11/2006 – A retrospective cohort study presented by Gunnar Midhagen with his Doctoral and Licentiate Theses at Linköping University, Sweden, found that those with diagnosed celiac disease actually have a 47% lower cancer risk than the normal population, presumably because a majority of them follow a gluten-free diet (although the study did not address this). The study also found that those with celiac disease have a 38% higher mortality rate than the normal population, which is due to a 48% higher rate of death due to ischemic heart disease. It would be interesting to determine what causes the higher heart disease risk, and I would speculate that it has to do with fat absorption—specifically the decreased ability of those with celiac disease to absorb omega-3 fatty acids. More on this topic can be found in this article: Heart Failure, Cardiomyopathy and Celiac Disease By Laura Yick Here is the abstract of the study: High Mortality in Ischemic Heart Disease in Patients with Celiac Disease Gunnar Midhagen Department of Internal Medicine, Skovde Hospital, Skovde, Sweden INTRODUCTION: "Previous reports about increased risks of malignancies and mortality in patients with celiac disease have been criticized as skewed by selection bias, because they emanate from referral centers. Recent register based studies indicate lower risks, but are contingent on complete registration." AIMS & METHODS: "Our aim was to perform a retrospective cohort study of all celiac disease patients residing in two Swedish counties and evaluate the risks of malignancies and excess mortality. All diagnosed celiac disease patients 15 years or older who were residents of the örebro and Linköping hospitals primary catchment areas on 31 Dec. 1986 were identified and followed up for at least 15 years. All celiac disease patients were checked against the Swedish hospital inpatient register. Standardized mortality ratios (SMR) and standard incidence ratios of cancer (SIR) were calculated." RESULTS: "There was a 47 percent lower risk of all malignancies in our total celiac population SIR=0.53 (95% C.I. 0.31-0.83) as compared with the general population. Total mortality was increased by 38% (SMR 1.38, 95% C.I. 1.08-1.75) as compared with the general population and was most pronounced in patients over 65 years (SMR 1.46).This was mainly explained by a 48% increased death rate in ischemic heart disease, significant in patients over 65 years (SMR 1.58, 95% C.I. 1.00-2.06). " CONCLUSION: "In a population based setting including all patients with celiac disease, there was no increased risk of malignancies. However, this study confirms an excess mortality risk, which appears to be attributable to ischemic heart disease mainly in patients over 65 years of age."
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Diabetologia. 2005 Apr 14 Celiac.com 04/29/2005 – According to Italian researchers an improper immune response to wheat may play an important role in the pathogenesis of Type 1 diabetes. The researchers fed one group of female non-obese diabetic (NOD) mice a standard gluten-free diet, while another group of NOD mice was fed a standard gluten-free diet that also included wheat proteins. The researchers then evaluated the small intestinal architecture of the mice and found that the wheat-protein group "showed reduced villous height, increased intraepithelial infiltration by CD3(+) cells and enhanced expression of H2-IA and IFN-gamma mRNA when compared with mice on the gluten-free diet." After 43 weeks the cumulative incidence of diabetes was 65% in the gluten-free group, and 97% in the wheat-protein group. The researchers conclude that the mice that ate wheat proteins had a much higher incidence of diabetes and small intestinal enteropathy that included higher mucosal levels of pro-inflammatory cytokines.
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Gastroenterology. 2005 Feb;128(2):393-401. Celiac.com 02/09/2005 – Norwegian scientists have been mapping gluten T-cell epitopes in various wheat ancestors and have found several varieties that may be suitable for those with celiac disease. The trigger for celiac disease has been identified as the epitopes that cluster within a stable 33mer fragment of wheat chromosome 6D. The scientists extracted and screened gluten from a variety of modern wheat ancestors to look for any T-cell stimulatory gluten peptides. They found that the 33mer fragment is encoded by alpha-gliadin genes on wheat chromosome 6D, which does not exist in the gluten of diploid einkorn or in certain types of tetraploid pasta wheat. These findings indicate that there may be grains that have long since been considered unsafe for those with celiac disease, but which may actually be safe and not contain any harmful gluten proteins. The most encouraging thing about this research is that baking and pasta-quality wheat ancestors could one day be added to our Safe List, which would greatly increase the quality of gluten-free products. Note: We strongly advise against celiacs including these grains in their diet until more testing and research is done to verify their safety.
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Scand J Gastroenterol. 2003 Jul;38(7):727-31. Effectiveness of the sorbitol H2 breath test in detecting histological damage among relatives of coeliacs. Tursi A, Brandimarte G, Giorgetti GM, Inchingolo celiac disease. Dept. of Emergency, L. Bonomo Hospital, Andria (BA), Italy. Celiac.com 08/07/2003 - An Italian study conducted by Dr. L. Bonomo and colleagues and published in the July 2003 edition of Scandinavian Journal of Gastroenterology concludes that A significant proportion of coeliacs may be missed if relatives are screened by serology only, while the efficacy of sorbitol H2-BT in screening relatives is confirmed. This study confirms that neither a breath test nor serology can replace intestinal biopsy, which remains the gold standard for the diagnosis of celiac disease, thus confirming the continued importance of performing biopsies for diagnosing celiac disease. The studys goal was to determine the diagnostic capabilities of serological tests (antigliadin (AGA), antiendomysium (EMA) and anti-tissue transglutaminase (anti-tTG)) and sorbitol H2 breath test (H2-BT) in the detection of celiac disease in first-degree relatives. The study screened 111 first-degree relatives of 37 celiac families using both test methods to determine candidates for small-bowel biopsy. First-degree relatives with abnormal test results underwent a small-bowel biopsy, as did those with negative serological and H2 breath test results who had clinical complaints or suspected that they may have celiac disease. The biopsy results were expressed using the Marsh classification system, and celiac disease was diagnosed in 49 of the 111 screened relatives of celiacs, or in 44.14%. A breakdown of the results is as follows: 5 showed Marsh IIIc, 8 Marsh IIIb, 16 Marsh IIIa, 13 Marsh II and 7 Marsh I lesions. 19 relatives showed the classical form of celiac disease, 20 showed the sub-clinical form, and 10 showed the silent form. The serological test results indicated an overall positivity of only 36.73%, with strong positive results only in those with severe intestinal damage and Marsh IIIb-c lesions. The sorbitol H2-BT breath test results showed an overall positivity of 83.67%, and showed strong positivity in patients with slight histological damage (Marsh I-IIIa).
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Pediatrics 2002;109:833-838. Celiac.com 06/06/2002 - The results of a study conducted by Dr. Graziano Barera and colleagues from the Scientific Institute H San Raffaele, Milan, Italy and published in the May issue of Pediatrics indicate that those with type 1 diabetes are 20 times more likely to also have celiac disease. The researchers collected data on 274 consecutive newly diagnosed type 1 diabetes patients with a mean age of 8.28 years. These patients were studied for the following 6 years. At the time of their diagnosis 10 of them (3.6%) already had celiac disease, and over the next 4 years an additional 12 children tested positive for antiendomysial antibodies, and 7 underwent biopsies and were confirmed to have celiac disease. The overall prevalence of biopsy confirmed celiac disease in the group was 6.2%, and most of the cases were asymptomatic and the children showed no obvious signs of the disease. The researchers conclude that greater than 10% of children with newly-diagnosed type 1 diabetes had developed serological markers for celiac disease within the first 6 years of diagnosis, and they recommend that children in this category be screened annually for celiac disease for several years following their type 1 diabetes diagnosis.
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